ACMG Changes Recommendations on Incidental Findings and Opting Out

By Allison Proffitt 

April 1, 2014 | Incidental findings and their treatment dominated the conversation at many sessions of the Annual Clinical Genetics Meeting last week in Nashville, and today, the American College of Medical Genetics and Genomics Board of Directors announced new recommendations for the return of incidental findings. The Board still considers incidental findings to be important medical information, but recommends an “opt-out” option be offered to patients before testing.  

Previously, the official ACMG recommendations allowed patients to opt out of receiving genomic information and incidental findings about 56 genes recommended for sequencing. The new recommendation suggest that patients be given the choice to opt out before testing takes place, so that results that they would wish not to receive are not generated.

The new recommendation was made a year after the initial ACMG recommendations were announced in March 2013. The Board referred to “direct feedback, participation by Board members in numerous forums exploring these issues, informal conversations, published articles, commentaries and, most recently, an extensive member survey” in making their decision, said a press release.

“This update to our recommendations moves the opt-out discussion to the point where the sample is sent rather than at the time when results are received by the ordering clinician, as was originally recommended,” explained Gail Herman, president of the ACMG, in a press release.

Incidental findings can be of great value to families, the Board maintained. Explanation to patients of the opt-out option and its implications should be part of the general education and informed consent process undertaken by the ordering clinician prior to ordering the test.